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What is Fair When it Comes to IVF Fundraising?

The Atlantic had an interesting article on using the Internet to fundraise for medical costs, including IVF, and I guess I clicked over to read it because of the question in the title: “Is It Fair to Ask the Internet to Pay Your Hospital Bill?”

Fair?

I can’t see how making a request is or isn’t fair.  I’m using the standard definition for the word: “in accordance with the rules or standards; legitimate.”  The Internet is the wild west.  You can post dick pics and you can post requests for someone to pay for your IVF cycle: anything goes until the Internet uprises and says, “nope” by turning your efforts into a meme.

In a day and age where every project is Kickstarted, I’m not sure why medical bills are held to a different standard than, let’s say, movies or the ingredients to make potato salad.

To prove my point, I Googled “is Kickstarter unfair” and not one article appeared on the front page lambasting the people who ask for money to pursue their passion projects.  Whereas, I Googled “is IVF fundraising unfair” and there were 5 posts about it on the front page alone.

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I don’t mind being asked, but I’m not in a financial position to help.  I feel badly, but I also think people understand.  On any given day, I am asked to donate money to various causes that people are running or biking or walking to support.  I am asked to attend fundraisers at food establishments to help pay for X, Y, and Z.  I am asked to run or bike or walk myself to help raise money.  And I am asked to fund projects on Kickstarter and family building efforts on GoFundMe.  Even if I contributed only a $1 to each cause, when I am asked on average 8 times per day, that comes to almost $3000 per year.

And let’s face it, only kids at lemonade stands jump up and down in excitement over a $1 donation.

So I feel badly, but that’s on me.  It’s still fair of the person to ask, just as it is fair for a person to stand on a median in the street holding a cardboard sign.  Does it hurt when seeing them standing there with their sign punches me in the conscience?  Yes.  But again, that’s on me.  And being punched in the conscience isn’t a bad thing, even when you know that you don’t have the means to make everyone happy, to make everyone feel as if their efforts are rewarded, their requests granted.

We all need punches in the conscience to not become complacent.

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The one part I did agree with in the article is a quote that came towards the bottom:

“If we use crowdsourcing for healthcare costs as a way to replace what a good healthcare system might do, then we’re really creating a new health disparity.”

Meaning, if we set up a health care system that is so prohibitively expensive that only people who have the means to access a computer can do the appropriate fundraising to pay off the cost of treatment, then we are deepening the health care divide where the rich get saved and the poor die.

Fair, in this case, is an accurate descriptive term, but the fairness should be addressed at the medical system itself and not the people who ask for donations.  It is totally fair to ask people to help with hospital bills, but it is totally unfair that we have a system where a person can have steady work and good insurance and still can’t afford medical treatments.

It speaks to the lack of value our individual lives hold.

Which is pretty depressing.

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I’m curious how people who have used the Internet to crowdfund for medical reasons read that article or approach this question.  Or how people on the other side of the equation — the ones being asked — feel about the request?

18 comments

1 Rachel { 03.17.15 at 8:34 am }

I’ve never used it but I’ve donated to GoFundMe before. I look at the whole completely differently than this article – it’s a BLESSING that people have this means. 20 years ago in a crisis, people had to either go broke, go into debt, or lose everything just to support their spouse going through cancer treatments in a city 3 hours away. Now, they don’t have to do that – they can create a site that people from all over the world can donate to IF THEY CHOOSE. That’s a huge blessing, and what a great resource for those in a crisis where the healthcare system or social system has failed to meet their needs. I say failed because these things are uncontrollable and common – accidents, illness, infertility, etc…and still there are little in the way of supports for them. My good friend just went through this when her husband was in a near fatal accident in his gravel truck and spent 3 months in ICU recovering from something that should have killed him. It was almost a year ago and he is still not walking on his own….he has a long road ahead of him. He qualifies for workers comp but it takes weeks for that stuff to come in, so thanks to GoFundMe she was able to go back and forth from the hospital and have her 4 kids taken care of. Without it, there was no means for her to pay for gas and travel and daycare – and no social service available to her. She needed to be with him, he was fighting for his life, but without the donations she wouldn’t have been able to.

The only part about all of this that isn’t fair, is that people need to use it in the first place. Surely, with how much we can pay our CEOs, we can find it in the budget to support people in crisis? Or with advanced medical needs?

2 Working mom of two { 03.17.15 at 9:42 am }

I kinda have issues with it–I wonder if gee do these people go on vacation? Go out to eat? None of which we did when struggling to pay for ivf. i don’t spend my charity dollars there.

3 Linda { 03.17.15 at 10:02 am }

whether it is fair or not, it probably isn’t up for others to decide. If you aren’t in the heart of the situation, you never truly know the exact circumstances.
I also don’t see much difference in crowd sourcing medical bills and someone planning a spaghetti benefit dinner. Those, and other similar things have been around a long time, crowd sourcing is just making your cause easier to donate to and more global than local.

4 Charlotte { 03.17.15 at 10:15 am }

This is an interesting post. Is it fair to ask for money on the Internet? Sure. Is it the right thing to do? I don’t know. I guess it depends on what it is for. I am of the belief that my bills are my bills, that I am responsible for them no matter what. I have crappy health insurance that leaves me with huge out of pocket costs every year, but rather than ask for donations I try to work with the providers to reduce the bills or at least make it manageable. Asking for donations for something like that seems like the easy way out.
There are exceptions, like people facing a devastating medical crisis or other huge financial hardship, that I don’t feel the same way about.
I am not a giver of money to the GO Fund me type stuff. I donate through my school and church and local communities. I feel like the people who give money to the potato salad guy are stupid, but it is not my money so whatever.
Fundraising for IF treatments is dicey to me. I guess when done correctly and appropriately I don’t have a problem with it, even if I don’t necessarily agree with it, under the idea that if you can’t afford it you shouldn’t do it.
A couple of years ago there was a pretty prominent IF blogger, in that her blog and Twitter gained a ton of popularity. She was very honest in her blog, not covering up the fact that her and her husband mismanaged money, were always broke, didn’t hold steady jobs, had no health insurance, ect. She set up an IVF fundraising blog and several fundraising sites. She literally begged every day for money, continued posting how “unfair” the universe was to her and about all of their self-inflicted money woes. She never told or showed what she was also doing to help get money together on her own, you know, how she was saving or changing her own lifestyle. Then she started asking for money for things unrelated to IF. She ended up eventually getting several thousand dollars which she never ended up using for IVF, and now she has virtually disappeared from existence. I understand not everyone is like this, but really, how do you know?

5 nicoleandmaggie { 03.17.15 at 11:47 am }

I wish health insurance was better so that people didn’t have to get crowd funding for medical bills. IVF is a bit difficult because it is expensive and there’s some moral hazard involved– some people would have had babies using less expensive/less invasive technologies but can be pushed to IVF earlier than they would have been without coverage because that’s what makes the providers the most money and giving IVF to people who don’t really need it can pad provider success statistics. But there’s ways to get around those concerns with common-sense rules and guidelines that places that do cover IVF have adopted.

6 JoAnne { 03.17.15 at 12:02 pm }

You probably know, but not everyone here does, that there is a page and a post on my blog asking for assistance. Sort of. It’s more there because people have asked me how to assist and I want to make it easier. It’s not an easy thing to do, to ask for help. There is a lot of judgment, both from others and from myself. It’s difficult to admit that you don’t have everything all perfectly squared away. The truth is, though, that I don’t.

I don’t mismanageme money, neither does my husband. We are careful and we don’t live outside our means. He has a good job and good insurance, at least for everything other than ANY infertility treatments. We’re not even talking about IUI, let alone IVF, we’re talking basic timed cycle appointments and medications. So, yes, I admitted that we could use help and opened it up for other people to help if they could/want to/don’t have objections.

For me it’s not about whether or not the universe is unfair. Sometimes it is, sometimes it isn’t. I’m not asking people to pay my bills or fund my ski trip. I don’t want money from anyone who has any reason not to give — be it financial or philosophical. I respect people’s choices, beliefs, and needs. I also respect that some people do want to help and have the means to do so, so I may as well make it as easy as possible for them.

I have also let people know of other ways they could help. Sharing my posts, commenting, providing feedback, letting me know when they see an opportunity that might work for me — I appreciate assistance in all forms. I don’t expect it, but I am honest about the fact that it helps.

I don’t expect the crowd to fund our treatments, but I won’t let my pride get in the way of accepting assistance if it is offered. I hope that things will work out and that, when they do, the bits of help that I’ve been able to get will mean that it is slightly less difficult to get a college fund going.

Everyone who reads this comment is welcome to visit my page and review how I have asked for help. As I said, there is a post and a page (the link to the post is at the top of the page). The page is entitled “Want to Help”. If you want to offer feedback you are welcome to do so. Please, however, either keep it constructive or go ahead and explain why your personal perspective is against such requests. (Differing perspectives are accepted and respected, rudeness is not.)

7 earthandink { 03.17.15 at 12:21 pm }

To paraphrase Amanda Palmer: anyone can ask for help for anything. There’s nothing unfair about it. Anyone can do it. Anyone at all.

8 Angela { 03.17.15 at 12:57 pm }

I have a fundraiser to help me pay for IVF. Here’s the thing. I don’t have any family, or church, or anyone to ask for help. I also haven’t been on vacation in over 7 years, do not own a home, and only have 1 car that my husband and I share while both working fulltime. Neither of us are college educated, but we have okay jobs, that pay our bills and provide health coverage. We literally ate ramen for lunch to try and afford IVF and it was just unattainable with -some- help.

People are free to judge us, and think we don’t deserve to have children, but I think if you believe that you might want to take a long hard look at yourselves in the mirror, as your privilege is showing.

We pay out for all sorts of things, why is asking for medical treatment help so taboo?

9 Ana { 03.17.15 at 2:01 pm }

“is totally unfair that we have a system where a person can have steady work and good insurance and still can’t afford medical treatments.”
I’d take it further—even those without steady work or who have crappy insurance should be able to afford medical treatments.

Otherwise I agree with you. You can’t label someone asking for help as fair or unfair. And you can’t label someone deciding to help someone else as wrong or right. Its one option that is available and I’m fine that there are people who choose to use it and benefit from it. And we could all use a few more punches in the conscience now and then to keep us on the right track.

10 Sharon { 03.17.15 at 3:51 pm }

I think it’s fine for people to ask for help paying for IVF, as with anything else. I also think it’s fine for those who are asked to decline to help.

I give sparingly and selectively to requests for financial help from friends and family, as my means allow. There might be times I wish I could help and cannot, but like you, Mel, I am approached often for donations to various causes and must pick and choose.

11 deathstar { 03.17.15 at 5:03 pm }

I think I’ve funded precisely 2 things online, one for a theatre project and one for a food program in India. I think it’s fair to crowdsource for IVF; why not? People fundraise for funds for cancer treatments, right? There’s no way my husband would have let me do it; no instead we used our savings and credit cards. Our family building efforts led us to debt, no doubt about it. Having access to free medical care did nothing to help that since it is not covered in any way in most provinces.

12 Lisa { 03.17.15 at 8:00 pm }

I agree with others in that I don’t think it’s “fair” or “unfair.” It’s a tool and people can choose to use it in an ethical, respectable manner or they can use it abusively. I’m not offended when people ask. For some, it may be their only hope. 90% of the time, I can’t or don’t give. But there have been a few fundraisers where I have gladly given to a friend in need or someone who is doing amazing work I really believe in. I think sometimes people want a way to help. And often, especially during infertility, the only way they can tangibly help is by giving. If it offends people, then that’s their reaction and they don’t have to give. As for the comment about people eating out and going on vacation, I think that’s a bit unfair in itself. Even people who ate home for several years and never took a vacation may have trouble saving $15,000-$20,000 for one IVF attempt. (Lord help them if they need more than one attempt). Obviously, I wouldn’t give to someone who is living large and flamboyantly, but I wouldn’t want them to become shut-in monks who can’t take a quick weekend getaway and get a steak every once in a while, either.

13 Mali { 03.17.15 at 10:03 pm }

I’m not sure whether this is a big thing in NZ or not. We occasionally hear about crowd-sourcing for arts-related projects, especially to gain wider/international exposure for different projects. And occasionally we hear about people seeking assistance with non-funded medical treatments, usually for expensive treatments (often experimental) overseas. Back in the 1980s, a very talented young woman a year ahead of me at university got publicity seeking money to go offshore for a heart transplant (they are now routinely done in NZ, but weren’t then). I would have contributed, but she died only a matter of days after I heard about it. She was (if I recall) the first person I knew who was my age who died of an illness.

It seems that the consensus that talking about fairness when it comes to crowd=sourcing is redundant. There’s no fair or unfair. What is unfair is that medical costs – for whatever treatments (elective cosmetic surgery perhaps the exception) – are not fully funded (by the state or insurance), and can put some people into debt, or cost them their lives, whereas others never have to spend that money or take those risks.

14 Cristy { 03.17.15 at 11:07 pm }

There’s so much crowdfunding happening today. In fact, given that government grants for research will continue to decrease, there’s been a push in the science community to crowdfund.

So if we’re encouraged to do it for research, which fails 90% of the time and is not guaranteed to result in anything, why not do so for medical expenses? Though I agree it’s a shame that medical costs are so insanely high and IVF is considered a cosmestic treatment that people have to go this route to even grow their families.

15 Ann Z { 03.18.15 at 12:47 pm }

Man “fair” and “unfair” in relation to crowdfunding is just hard. There’s so many things about crowdfunding (for projects or medical expenses or anything else) that’s just inherently unfair. There are tons of worthy projects that don’t get funded for all sorts of unfair reasons. As much as I am a fan of crowdfunding (as someone whose done a campaign, and financed others), it isn’t any more fair than other systems of funding, just unfair in different ways. Of course, the world is pretty unfair altogether. It is unfair that some people can conceive easily and others can’t. It is unfair that some people have friends and family that are willing and able to help and others don’t.

But I don’t think asking for help is a matter of fair or unfair, although I totally understand how hard it was to ask for help. I think that for medical expenses, there are often people on the sidelines who want to help and don’t know how. If there are people wanting to help, and a tangible way for them to help, then asking seems like a reasonable thing if the asker is willing to put themselves out there.

A friend of a friend did crowdfunding for his cancer treatments after his insurance dropped his coverage. It ended up raising a lot of money and awareness of just how awful some of the insurance companies’ practices can be, and in the end, his insurance provider came through and the monies raised (>$100,000) were donated to other patients in need. So in that respect, sometimes it can be a force for pointing out the unfairness in the world.

16 Pam/wordgirl { 03.19.15 at 10:32 am }

Hi Mel,
What I think is interesting is that we focus on whether or not people are deserving or undeserving of donations but we don’t often discuss the fertility industry itself as a for-profit business making money. No different I suppose that other aspects of our broken healthcare system. When I was in college I took a molecular biology class which ultimately became a discussion about the growing technology and industry surrounding fertility treatments… It seems if I remember right that the professor herself had some link to a company in Denver. I remember at the time thinking that though this was about biology and about medical issues that it was also about business.

Ugh.

Xo

Pam

17 Blake { 03.19.15 at 4:25 pm }

I was just talking about this topic with my family this week. Because we’re in the middle of a 2nd IVF round and our savings account that was specifically for this is getting low. My sister suggested crowdfunding, and my husband and I were at first, totally against it. Its our choice to go this route. What isn’t our choice though, is not being able to conceive naturally, due to Huntington’s Disease. That right there is where it becomes not fair. Its not fair that my husband has HD. But what we’re doing, is for the future generations of our family, and for society in general. If people were able to have IVF/PGD for these types of diseases and disorders, such as breast cancer, then the future generations won’t even have it in their genes. I feel like if I wanted to have a fundraiser, it would be with my friends and family, and it would be an event in my town where we can all come together for the love of family and friendship. I would feel strange asking complete strangers to help me out financially.

18 Kasey { 03.26.15 at 10:40 am }

I didn’t read the article. But I really don’t see asking for financial help through the internet any different than asking in person. I think of the church I grew up in and taking a special offering for someone in need was not seen as unfair or wrong to do. You gave what you could if you wanted and anonymously. It’s just a different way of asking your community for help. Most of the ones I’ve been asked to contribute too are friends of friends, so I consider myself part of that community net, even though I have personally never donated online. But it’s not unfair to ask, as you said the decision to give or not is with the potential giver.

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